June 12, 2012 - Home life after Fontan (Doing great!))

Hi everyone…..I thought I would send out a post saying we are doing great, adjusting to being home with Caden and his needs, and just praising God for us to be able to be under one roof again together.   Probably the most challenging things now for us is remembering not to pick Caden up under his arms (to allow the sternum to heal), to keep Griffin off of him (he is prone to jumping all over Caden), and not allow him to eat anything with more than 3 grams of fat (so we have to watch what we also eat in front of Caden).  We will be going for regular blood draws for several weeks to monitor his comidin levels and sodium to make sure these diuretics aren't pushing too much sodium out of his system which is necessary for important body/neurological  functions.  We also have an appointment back up in Milwaukee to get Caden's stitches out of his sternum (very top and bottom), and all the chest tube incision sites as well as listen to his heart function this Friday at 1:00pm

We came home on 5 medications

Aspirin…they just increased his dose
Enalapril (new heart medication) similar to Captipril his old medication but this is only given 2x day
Coumadin (blood thinner)
Spironolact (diuretic)
Lasix (diuretic)

The challenge now is Caden developed a little oral aversion in the hospital as everything he consumed had hidden medication in it for the first several days so meds are a bit more challenging than before and the quantity (even crushed) is a lot even when mixed with food (normally we crush and mix with pears or applesauce).  This hopefully will get easier as time goes on….once he understands we aren't going to ruin his food, like we had to do in the hospital.

I took off the steri strips off his chest today (all except the very top ones).  Caden is definitely red under the strips but it appears to be almost a rash more than an infection.  He has such sensitive skin I'm just going to see what it looks like in the morning.  The chest tube sites are healing, and now everything is just "itchy" to him.  He can't take a bath for 6 weeks, so we just take a quick wash/rinse off/pat dry the incision.

Caden has been monitoring his own activity.  He has been keeping up with Griffin for the most part but last night asked to go to bed at 6:30 and awaits his naps (which he normally dreads) so he is taking it easy.  We were told to lay low, keep him healthy away from anyone sick during these 6-8 weeks post.  Just like the other 2 surgeries.  I'm assuming if you saw him, you wouldn't even notice he has had surgery as he looks great!

Although the surgery is behind us, there are other complications that can occur post Fontan (with his new circulation).  These don't happen immediately so we pray to keep Caden healthy in every way possible.

We want to thank everyone once again for all your prayers, hugs, words of encouragement, big and little things you did for our family. This is how we remain so strong!

Love always - Melissa and David